Setting Bold Goals to Advance Progress for Narcolepsy

Project Sleep, a 501(c)(3) non-profit dedicated to raising awareness about sleep health and sleep disorders, is proud to announce bold organizational goals to improve outcomes for people with narcolepsy.


Narcolepsy is a chronic neurological condition of the sleep-wake cycle estimated to affect about 1 in every 2,000 people — that’s 200,000 Americans and 3 million people worldwide. However, studies indicate that public understanding of narcolepsy is limited and often inaccurate. Many individuals who witness the symptoms don’t realize that these behaviors could be signs of narcolepsy. Seventy percent (70%) of adults have heard of narcolepsy – the lowest percentage among a range of diseases (see chart).

As a result, people with narcolepsy (PWN) often face stigma and are labeled as antisocial, lazy, careless, faking, unmotivated, and incapable. PWN report feeling socially isolated, inferior, and hesitant to disclose their disorder to others. Misperceptions and low awareness of narcolepsy also perpetuate delays in proper detection and diagnosis. Approximate delays to diagnosis are currently between 8 and 15 years.


To improve outcomes for people with narcolepsy, Project Sleep is proud to announce three bold organizational goals:

• Increasing the percentage of adults who have heard of narcolepsy to 80% by 2025, • Reducing delays to proper diagnosis to an average of two years by 2030, and • Reducing stigma for those living with narcolepsy.

“To chase all three goals, Project Sleep will leverage best practices in health communications and the power of first-hand storytelling,” explains Julie Flygare, J.D., President & CEO of Project Sleep. “We aim to strike an important balance between communicating the serious nature of the condition while also reducing both societal stigma and self-stigma.”

As part of this effort, Project Sleep is launching a new Narcolepsy Awareness Program (NAP) starting in 2018 to complement Project Sleep’s current programming – including the Rising Voices of Narcolepsy leadership program, the Jack & Julie Narcolepsy Scholarship, the Narcolepsy: Not Alone campaign, the Sleep In, and our advocacy efforts.

The Narcolepsy Awareness Program includes a number of tactics and key progress indicators (KPIs) to ensure we stay on track toward achieving our long-term vision. We will share exciting updates and opportunities to get involved in the coming months! Project Sleep is extremely grateful to Jazz Pharmaceuticals and Avadel Pharmaceuticals for providing generous grant funding to help support a portion of the Narcolepsy Awareness Program in 2018, along with visionary individual and family supporters across the country and around the world.


“Project Sleep is thrilled to put our stake in the ground for what we see as meaningful progress over the next decade and beyond,” added Flygare. “Yet achieving these goals will be due to the strength and determination of the entire narcolepsy community, including individuals, organizations, researchers, clinicians, drug developers, and public health experts around the world. Thank you to all those who join us in this mission to improve the lives of those living with narcolepsy and their loved ones for generations to come.”


Recently, Flygare described these bold goals in her Sleep In 2018 FB Live Broadcast.


You can accelerate this vision for progress by making a contribution today. As a small non-profit, your generosity goes a long way.

Thank you for your support!

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2 Comments. Leave new

  • Hi Julie, I enjoyed listening to you on Saturday at the RESTON webinar. We met briefly a few years ago at a NN conference. Our stories are similar in many ways, including getting through law school (admitted in Ohio 1976), serious cataplexy, connection to NN, studies of the law and narcolepsy. Like your website and your goals. Small donation sent today. We’ll be in touch. Thanks,
    Bob Cloud

    • Julie Flygare
      April 14, 2018 12:40 pm

      Thank you so much for this kind comment, Bob! Your support makes my day! I look up to you quite a bit for your work to improve the lives of people with narcolepsy. Thank you for all you’ve done to help others. Gratefully yours, Julie


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